Our first ophthalmology appointment we came prepared! Will and I were the only two allowed in and Dad waited in the car in the parking garage.
Pro Tip: When waiting in a parking garage park on the roof for best cell service!
We were prepared this time with plenty of diapers, toys, bottles of formula, and a nursing cover. Will was perfect for the appointment! He laid as still as a 6 week old could for his dilating eye drops and napped in my lap for the hour it took to let them work. We were a last minute work in appointment so I knew it'd be a day. Will sat on my lap with his eyes wide open for the whole 30 minutes the doctor examined his eye. She held up lenses, waved toys around, and even turned the lights off waving light up toys. I sat with Will on my lap holding my phone with dad on facetime frequently trying to repositions so he could hear/see.
After the exam she started to explain to us the term FEVR (familial exudative vitreoretinopathy). The term Norrie was also mentioned briefly but the doctor didn't feel that was likely. This was the first time we had heard these words and never did we imagine they'd become part of our everyday vocabulary .
We were desperate to get any idea of William's vision possible. The doctor tossed out a lot of vague possibilities worst case 20/200 best case 20/50. On average she talked about 20/80 with intervention like lasering. We immediately started trying to image what 20/80 vision would look like. An individual is considered legally blind and unable to drive at 20/70. We were told however that he'd likely be able to go to regular school with large print books. This alone brought our world crashing down. When you picture your life with your child you image playing catch, taking them to soccer practice, teaching them to drive and so many other things. This was taken from us in a matter of moments.
Our second ophthalmology appointment was much different. Jon had done research and called anyone he could to find the best in the field possible. We found who is now William's retinal surgeon Dr. Jonathan Sears at Cleveland clinic. After a 2 hour drive at the crack of dawn we spent 5 hours total at the Cleveland Clinic, 2 doctors, and ultrasounds of both eye requiring 3 people to interpret we were faced with the same words FEVR and Norrie. When discussing vision however we got a very different answer.
"His left eye looks horrible but it's nothing compared to his right" Dr. Sears. The big question, what does this mean for vision? Best case scenario 20/200. Our worst fears were realized. The week before 20/80 was crushing enough but 20/200 was a hit we were not ready for. A question we kept asking was that with glasses? He gave us an analogy that helped us understand. When he gives us numbers for sight that is always factoring in glasses. Glasses to an ophthalmologist is like shoes to a runner.
We were at then end of our hours long visit waiting to hear next steps as someone popped their head in and said we'll see you tomorrow for surgery. That afternoon Will had a COVID test and the next day we drove back to Cleveland for Will's first sedated exam and surgery. That first day in Cleveland I nursed Will in 2 different waiting rooms, in front of 1 doctor, and in the back of the car waiting 45 minutes for his drive through COVID test. It took 2 doctors and 3 ultrasound specialist to even guess at what was going on in his retina, and still the worst was yet to come. The drive home from Cleveland is always the worst trying to absorb what you've heard and explain it to multiple family member. It took us beyond the point of exhaustion.
What we learned
We learned a lot in those first days of ophthalmology. I've heard you only absorb 60% of what you hear in an appointment I definitely find that to be true. as much as you try to focus when your entire world is crashing down around you there is only so much you can absorb.
Vision impairment is more of a spectrum than you'd ever realize. These diseases we were talking about and effect 1 or both eyes. you can have 20/80 vision in one and be completely blind in the other. I also neve truly understood what 20/200 meant. I look at something 200 feet away and the blurred image that comes with that. That's how good Will could see at 20 feet away.
This was our new reality!